Planning ahead as a person with dementia

How can I plan for the future as a person with dementia who lives alone?

When you have a diagnosis of dementia, it’s important to plan for the future. This could be about the type of care you want, or where you want to live if you can no longer live alone.

This can be more important when you live alone because you may not have someone who knows what you want and what your preferences are.

Listen to our helpsheet for a summary of some of the main ways you can plan ahead:

Consider putting tools in place for making future decisions

When you feel ready, start thinking about what your wishes are and recording them – including who you can share this information with. The following are key things you can put in place to make sure your wishes are carried out in the future:

Lasting power of attorney (LPA) and Enduring power of attorney (EPA)

LPAs and EPAs give someone you choose the power to make decisions on your behalf, if you can no longer make them yourself.

You can have an LPA for health and welfare (which covers decisions about care and treatment, including where you live), or for property and affairs (which covers decisions about finances and selling a house on your behalf) or both.

In Northern Ireland, the EPA system only covers property and financial affairs.

In the film below, Saskia talks about how she has not been able to get lasting power of attorney for her mum, Teresa, who can no longer give consent. She stresses the importance of others getting an LPA while they can.

In the film below, Saskia talks about how she has not been able to get lasting power of attorney for her mum, Teresa, who can no longer give consent. She stresses the importance of others getting an LPA while they can.

Research housing options for when you can no longer live alone

Dementia is progressive and as time passes your symptoms will get worse. You will need more support and may no longer be able to manage at home on your own. It can be hard to know when this point has come. 

Be honest with yourself 

You may struggle more than you used to with day-to-day tasks like cooking or washing. You may not feel safe in your own home anymore. Or you may find it harder to get out and about, and this may mean you feel increasingly isolated and lonely.

It might be hard to accept that you can no longer live alone. You may have lived alone for a long time, and you may be worried about losing your independence. It’s important that you’re honest with yourself. If you are struggling living on your own, or in your own home, you may want to move to somewhere you can get the support you need.

Think about other housing options

It can be a good idea to think about housing options before you need to move. This means that you will know what is available when the time comes. It might also feel less like a leap into the unknown if you have already thought about your options and found somewhere you would feel comfortable moving to.

You won’t necessarily have to move into a nursing or care home if you can no longer live alone. There are a range of housing options that you could consider. Some of these will give you more independence than others, depending on the amount of support you need.

• Sheltered housing – these are self-contained flats. They may have a warden and a 24-hour emergency alarm system. Some may have communal facilities. The level of support will vary depending on the scheme. Sheltered housing schemes usually expect residents to have a certain level of independence.
• Extra care housing – this is similar to sheltered housing but it provides extra support, such as assistance with personal care, meals, domestic support, and community activities.
• Shared lives – this is a scheme where someone who needs care and support moves in with, or is supported by, an approved Shared Lives carer.
• Care homes – these are either residential care homes (providing support and assistance with personal care) or nursing homes (providing nursing care as well). The type of home that will be most suitable will depend on your needs.

It can help to talk to someone you trust about options and what you would like to happen in the future. For more information on housing options contact the Elderly Accommodation Counsel (see our useful resources section for contact details).

Appointeeship

Appointeeship gives someone the ability to manage any income from benefits for you, if you’re unable to manage your benefits. If someone is prepared to act on your behalf, they should contact the Department of Work and Pensions (DWP) and request an appointeeship assessment. 

If you’ve already arranged a Lasting or Enduring power of attorney, they can manage your income from benefits, so you won’t need an appointee as well.

Advance decision (or advance directive in Northern Ireland) 

An advance decision records your decisions about future medical care. It is a legal document that allows you to refuse, in advance, specific medical treatments or procedures – for example, whether to be resuscitated if your heart stops. It can’t be used to refuse basic care.

Advance statement

An advance statement records your likes and dislikes, and your priorities and preferences for the future. For example, where you would like to be cared for or day-today things you like to do, such as having a bath instead of a shower. It isn’t legally binding, but can help people to know what you want if you cannot decide these things for yourself.